Care for Rare

September has been NICU awareness month and I’ve spent the last four weeks reflecting on our time in NICU…

Thinking about the first time I got to hold Penelope and how overwhelming it was, but also just brilliant. She was just off the ECMO and we had no idea our NICU journey was just at the beginning still. She was yet to be diagnosed with her rare blood sugar disease, and consequently the equally rare overgrowth condition, Beckwith Wiedemann, which ties into September also being childhood cancer awareness month. BWS lovelies are a devastatingly 600 times more likely to develop certain forms of childhood cancer than other kids. A figure I am never going to be okay with. The chances of this occurring completely diminish by age 8, but it is terrifying nonetheless.

This month I have also been putting collaborative plans in place to begin work with local charity Mylo and Friends who raise money for our local NICU. Mylo was Penelope’s “room mate” whilst she was in NICU and the pair advanced through the rooms together and became NICU graduates just a few days apart. Mylo was a prem baby and so the focus of the charity is to provide ‘prem bags’ full of necessities and comforts to parents who find themselves in NICU following the premature arrival of their baby. Mylo was an astonishing 10 weeks early and faced many challenges, but I am happy to report he is doing just marvellously now. The charity also fund bigger projects and have recently purchased a new cot for the neonatal unit. I plan to contribute to this amazing charity and provide supplies to cater for full term babies who end up in NICU. As it is as much of a surprise to end up with a poorly baby as it is a premature one. Although it is expected that a hospital bag will already be packed, supplies can quickly deplete and the last thing any parent wants is to have to leave their critical care baby in order to stock up on more nappies so I aim to be able to provide a helping hand and allow them to avoid having to dash out.

Penelope continues to thrive and is a beautiful, amazing little girl and I am beyond proud that she belongs to me! She loves her new little brother and has started to help out during changing and bath time; which is just the sweetest. A year ago last September she was in and out of hospital suffering a series of really bad hypos and needed a lot of medication increases until the issue was rectified, so she has come on loads since then. What a difference a year makes! ❤️ Not bad for a NICU grad! ❤️

My baby was in the neonatal unit for two weeks after he was born. Nothing that serious thankfully and please god he is now ten months and fine. They are amazing places – real miracle workers. We are lucky to have them. I’m so glad they helped your little girl and I wish her and you all a very happy and healthy life. #AnythingGoes